cysticfibrosismom

I'm just a regular mom, figuring out life with my daughter Sophia, who has cystic fibrosis.Take this journey with me.

Thank you Shinerama!

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Yesterday I spent the afternoon talking to 1st year students at Wilfrid Laurier University in Waterloo, Ontario. For many, it’s the first time they have lived away from home. This is the time in their lives when they will learn about themselves. They will discover what type of person they are. They will make important decisions about their futures. Whether they decide to remain in a Bachelor of Arts program or switch to Economics will pave the way for future careers. So early in this experience, I had the privilege to speak to them.

You see, WLU, like many universities across Canada, participates in Shinerama. This is a huge fundraiser for Cystic Fibrosis Canada. Nationally last year, they raised over $1 million for Cystic Fibrosis Canada. AMAZING. In order to both educate the 1st year students about cystic fibrosis and motivate them to spend large portions of their orientation week fundraising for us, I got to talk to several groups of students. It was a beautiful experience. The students were engaged. They were listening to my story. They were learning about my little girl- about all that she’s been through and about all that she will face. For me, it was cathartic. I got to share my fears, my hopes, my knowledge, and myself with these strangers.

One of the Shinerama leaders asked me if there was a person or a story that has stuck with me and motivated me. The question was unexpected, and I had to think about it for a bit. Then I looked up at these wonderful students and the answer was clear. It’s the people who have never experienced first-hand what cystic fibrosis means, yet are willing to spend countless hours fundraising for us, that inspire me. They could be sleeping in, getting to know their roommates, figuring out where their classes are. Instead they are running around campus cheering about how they are going to beat CF, washing cars, running BBQs, doing whatever they can for my daughter and the 4000 Canadians with cystic fibrosis. I am left speechless when I think about how awesome these young adults are. It’s easy to imagine why I’M motivated to find a cure, but what keeps THEM coming back year after year to raise funds for cystic fibrosis? In that moment I looked up and into the eyes of the students in that room, and I thanked them. From the bottom of my heart, I thanked them. Their kindness, their time, and their motivation, is what gives me HOPE. Hope for my daughter’s future is what keeps me going.

Thank you Shinerama students for making my daughter’s life longer and happier.

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One thought on “Thank you Shinerama!

  1. I would just like to say one thing on behalf of the student of Canada. Thank you. Thank you for coming to share your story. Thank you for inspiring those students at WLU. And thank you for sharing it on this blog. I attend UPEI and we participate in Shinerama each year. You wondered why we spent the time to raise money for Cystic Fibrosis Canada. I just want to say why I chose to help. I was on the fence about attending and my friend said I should atleast come to the speech for the kick off in the morining. If I didn’t want to after that, well she couldn’t make me stay. So I got up way too early and stood in a long line and did some more waiting around. But then they got us all to sit down and listen to the speaker. It was a young woman who had Cystic Fibrosis. She had us all take a straw and breathe through it saying that is how it feels to her. At that point I was thinking maybe I will go out, just for a bit. She kept talking, about the months spent in hospital, and her lowered life expectancy. By the end of the speech I was so moved that I had to help. My outlook had completely changed and I went out that day with her story in my mind and even though it was hot, even though it was a long day, and even though my feet hurt, I felt inspired by her to go out and help find a cure, better treatment, and a better life for her and many others like her. So I thank you again. Thank you for being there and inspiring.

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